SEED Follow-Up Study: Second Follow-up Survey of Young A

SEED Follow-Up Study: Second Follow-up Survey of Young Adults (Self-Report)

Contents

A. Exit from High School 2

B. Living Situation 3

C. Daily Activities and Social Participation 3

D. Vocational Support and Training 5

E. Job and Work Experience 7

F. Financial Support 10

G. Health, Mental Health, & Health Care Service Use and Need 11

H. Educational & Developmental Services 14

I. Romantic Relationships, Sexual Orientation, and Gender Identity 15

J. Sex Education and Behavior 16

K. Substance Use and Behaviors 17

L. Beliefs & Interests 19

A. Exit from High School

1. When did you graduate or leave school? (This includes traditional high school, homeschool, or another school program).

Month	Year

2. What was the highest grade level you completed when you left school?  (Check 12^th grade if you recently graduated high school)

❍ Pre-school	❍ 7th grade
❍ Kindergarten	❍ 8th grade
❍ 1st grade	❍ 9th grade
❍ 2nd grade	❍ 10th grade
❍ 3rd grade	❍ 11th grade
❍ 4th grade	❍ 12th grade
❍ 5th grade	❍ Don’t know
❍ 6th grade	❍ Does not apply, I did not attend a typical public or private school
❍ Other education, specify: _____________________________ (e.g., 18-21-year-old program for eligible high school students)

3. When you left school, did you…

• Receive a regular high school diploma

• Receive an occupational diploma

• Receive a certificate of completion

• Take a test and receive a GED

• Drop out or stop going

• Get expelled (or suspended but did not return)

• Other, specify: __________________________________

4. Since leaving school, have you attended a… (Check all that apply)

	No	Yes	If yes, did you graduate with…	No	Yes
2-year community college?			a diploma, certificate, or license?		
vocational, business, or technical school?			a diploma, certificate, or license?		
4-year college?			degree, certificate, or license?		
graduate program (e.g., master’s or doctoral program)?			advanced degree (e.g., master’s or doctoral degree)		

5. Are you currently enrolled in college?

• No

• Yes, Part-time

• Yes, Full-time

• Yes, but unsure whether part-time or full-time

B. Living Situation

1. Where do you currently live or what is your current living situation? (Check only one)

• Independently (alone) with some assistance

• Independently (alone) with no assistance

• Independently (with spouse or roommate)

• With parent(s) or foster parent(s)

• With an adult family member who is not a parent (e.g., sibling, aunt, uncle, cousin, etc.) Specify relationship: ____________

• With a legal guardian who is not a family member

• In a group home within the community

• In a residential facility separated from the community

• Other (Specify, please print): ____________________________

C. Daily Activities and Social Participation

The next questions are about activities you may have participated in since leaving school.

1. Since leaving school, have you participated in:

	Yes	No	Don’t know
A sports team or taken sport lessons?			
Any clubs or organizations?			
Any other organized activities or lessons, such as music, dance or language?			
Any type of community service or volunteer work at school, church, or in the community?			
Any work, including regular jobs as well as babysitting, cutting grass, or other occasional work?			

2. IN THE LAST 6 MONTHS, how often do you usually do the following:

	Never	At least once	Every other month	Monthly	Weekly	Daily
Get together socially with friends or neighbors?						
Call or text friends on the phone?						
Use email, instant messaging, Skype, texting, Facebook/Instagram/Snapchat messaging or taken part in chat rooms?						
Gotten together with ANY relatives, not including those who live with you?						
Gone to church, temple, or another place of worship for services or other activities?						
Gone to a show or movie, sports events, club meeting, or another group event?						
Gone out to eat at a restaurant?						

3. DURING THE PAST MONTH, on how many days have you done a total of 30 minutes or more of physical activity, which was enough to raise your breathing rate? This may include sports, exercise, and brisk walking or cycling for recreation or to get to and from places but should not include housework or physical activity that may be part of your job.

Number of days of exercise during the past month: ____

4. ON AN AVERAGE WEEKDAY, about how much time do you usually spend in front of a TV watching TV programs or movies, including streaming services such as Netflix, Hulu, Apple+?

• None

• Less than 1 hour

• 1 hour

• 2 hours

• 3 hours

• 4 or more hours

• I don’t know

5. ON AN AVERAGE WEEKDAY, about how much time do you usually spend with computers, tablets, cell phones, handheld video games, and other electronic devices, doing things other than schoolwork or watching videos on YouTube/TikTok, TV shows, or movies?

• None

• Less than 1 hour

• 1 hour

• 2 hours

• 3 hours

• 4 or more hours

• I don’t know

D. Vocational Support and Training

The next questions are about services or training you may have received after leaving school to help you find and/or keep a job.

1. After you exited school, did you receive any of the following services? (Check all the apply)

	Service	Yes	No	Don’t know
a.	Testing to find out your work interests or abilities.			
b.	Training in specific job skills, for example food services, computer skills, or training for another kind of job.			
c.	Training in basic skills needed for work, like counting change, telling time, or using transportation to get to work.			
d.	Career counseling, like help in figuring out jobs that might best suit you.			
e.	Help in learning how to search for available job positions online, write a resume, or prepare for a job interview.			
f.	Job shadowing, such as visiting a workplace and watching the way a job is done.			
g.	Apprenticeships or internships.			
h.	Other services or training? Specify: _____________________________			

2. Do you think you need job training or additional training that is not being provided now?

• Yes

• No (Skip to Section E)

• Don’t know (Skip to Section E)

3. Do you think you are getting enough job or career training?

• Yes

• No

• Don’t know

4. How useful do you think job or career training is in helping you get a job?

• Very useful

• Somewhat useful

• Not very useful

• Not at all useful

• Don’t know

5. What other kinds of job training or help do you think you need? (Check all that apply)

• Testing to find out your work interests or abilities

• Training in specific job skills, for example food services, computer skills, or training for another kind of job

• Training in basic skills needed for work like counting change, telling time, or using transportation to get to work

• Career counseling like help in figuring out jobs you might be suited to

• Help in finding or applying for a job such as learning how to search for available job positions online, write a resume, or prepare for a job interview

• Job shadowing, visiting a workplace and watching the way the job is done

• Apprenticeships or internships

• Other, specify: __________________________

• Don’t know

E. Job and Work Experience

The next questions are about work you were paid for since leaving school.

1. At any time since leaving school have you worked for pay other than work around the house?

• Yes (Skip to question 3)

• No

2. You have told us you are not currently working for pay. Please help us understand your situation.

Check all that apply then skip to Section F, Financial Support.

☐	Want to work but can't find work
☐	Have tried to work but faced discrimination or other difficulties with employers because of a disability
☐	Do not wish to work at present (taking care of family members, a stay-at-home parent, etc.)
☐	Not able to work because it would interfere with federal or state benefits (such as disability payments)
☐	Not able to work because the workplace would be too challenging (because of ASD or other health or mental health issues)
☐	Have an unpaid internship or volunteer position
☐	Full-time or part-time college student
☐	Other (Specify:_____________________________________________________)

3. What is the longest time you have worked at a particular job since leaving school?

4. For your current or most recent job, how many hours per week do/did you work on average?

• 1 - 9 hours

• 10 - 19 hours

• 20 - 29 hours

• 30 - 39 hours

• 40 or more hours

5. If you work(ed) part-time, or less than 40 hours per week at your current or most recent job, do you work part-time because you want to, or would you rather work full-time?

• Does not apply, I work(ed) full time

• I want to work part-time

• I would rather work full-time

• Other, specify __________________

6. For your current or most recent job, about how much are/were you paid per hour, per month, or per year at this job?

7. Did you receive benefits from this job? (Check all that apply)

• Health Insurance

• Vacation/Sick leave

• Retirement account

• Other insurance (e.g., disability, life, dental, vision)

• Tuition assistance

• Other, specify:

• None

8. For your current or most recent job, what was the work situation? (Check one situation that best describes your current or most recent job)

	☐
☐	Regular paid employment (with no help or support)
☐	Supported employment (you may have a job coach or other special help at work)
☐	Work in a business with a group of other people with special needs, all under supervision of an agency serving people with disabilities
☐	Day program that includes paid work
☐	Paid internship or work study program
☐	Other, specify: ________________

9. How satisfied are you with the work situation at your current or most recent job?

• Very satisfied

• Satisfied

• Neither satisfied nor dissatisfied

• Dissatisfied

• Very dissatisfied

10. For your current or most recent job, what is the job title?

Job Title: _____________________________________

11. Did you find your current or most recent job yourself or did you have help?

• Found the job on my own

• Found the job with help from an agency (e.g., a job coach or vocational rehab)

• Found the job with help from a family member or friend?

• Other, specify: _______________________________________________

12. Have you ever applied for any accommodations or supports to help you keep a job?

• Yes, applied and received job accommodations and/or supports

• Yes, applied but did NOT receive job accommodations and/or supports (Skip to Section F, Financial Support)

• No, never applied for job accommodations or supports (Skip to Section F, Financial Support)

13. If you have ever received accommodations or supports to help maintain employment, how useful were these services?

• Not useful at all (i.e., did not provide any additional advantage keeping job)

• Slightly useful (i.e., helped a little for keeping job)

• Useful (i.e., helped a good deal for keeping job)

• Very useful (i.e., made the difference between keeping or losing a job)

F. Financial Support

1. How much do you rely on your family (such as parents and siblings) for financial support such as paying your bills, housing, transportation, spending money for entertainment, or other financial?

• My family does not provide any financial support for me at all.

• My family provides less than half of my financial support. They help me financially sometimes.

• My family provides about half of my financial support.

• My family provides more than half (but not all) of my financial support.

• My family provides all my financial support.

2. What federal or state benefits do you currently receive? (Check all that apply or "none" if none apply)

Social Security Disability Insurance (SSDI)	☐
Supplemental Security Income (SSI)	☐
State disability programs that use only state and/or local funds	☐
Medicaid (for health insurance)	☐
Medicare	☐
Medicaid HCBS (Home and Community Based Services) waiver or Developmental Disability waiver	☐
Employment assistance or job support (sometimes called "Vocational Rehabilitation" or "VR")	☐
Section 8 Housing	☐
Transportation services for people with disabilities	☐
Other, specify:________________________________________________________	☐
None	☐

G. Health, Mental Health, & Health Care Service Use and Need

The next questions ask you for information about your mental health, suicide and sexual activity, along with other health care services you may have used or needed. You can skip any questions that make you feel uncomfortable. Your responses will be kept private and will not be shared with anyone.

1. Which of the following best describes your general health? Please mark ONE Box.

• Excellent

• Very good

• Good

• Fair

• Poor

2. OVER THE LAST 2 WEEKS, how often have you been bothered by the following problems?

	Not at all	Several days	More than half the days	Nearly every day
Feeling anxious, nervous, or on-edge.				
Not being able to stop or control worrying.				

2. OVER THE LAST 2 WEEKS, how often have you been bothered by the following problems?

	Not at all	Several days	More than half the days	Nearly every day
Little interest or pleasure in doing things.				
Feeling down, depressed, or hopeless				

2. Have you ever seriously thought about committing suicide?

 Yes

 No

2. Have you ever made a plan for committing suicide?

 Yes

 No

2. Have you ever attempted suicide?

 Yes

 No

If you are having thoughts about suicide, please contact the National Suicide Prevention Lifeline by calling 1-800-273-8255 or texting 988

2. Since leaving school, was there any time when you needed health care, but you did not receive it? By health care, we mean medical care as well as other kinds of care like dental care, vision care, and mental health services.

 Yes

 No (Skip to question 10)

2. If yes, which types of care were NOT received? (Check ALL that apply)

 Dental Care

 Hearing Care

 Medical care, routine preventative

 Medical care, sick or urgent care

• Medical care, hospital emergency

 Medical care, specialist

• Medical services for diagnosis or evaluation related to a disability

 Mental Health Services, counseling, or psychological services

 Vision Care

 Other, Specify _________

2. Which of the following contributed to you not receiving needed health care services:

	Yes	No
I did not have health insurance that covered the services needed		
I was not eligible for the services		
The services I needed were not available in my area		
There were problems getting an appointment when I needed one		
There were problems with getting transportation		
The (clinic/doctor’s) office wasn’t open when I needed care		
There were issues related to cost		
There were issues related to COVID-19 (e.g., concerned about being around others at doctor’s office who may have been exposed to COVID-19)		
Other (Specify:________________________)		

2. DURING THE PAST 12 MONTHS, have you had a chance to visit or speak with a doctor or other health care provider alone or privately, without your parents or another adult in the room?

• Yes

• No

2. During any visit in the past 12 months did a doctor or other health care provider ask you if you were sexually active?

• Yes

• No

• Don’t remember

The next two questions are only for participants who were born female. If you were born male, skip to question 14.

2. DURING THE PAST 12 MONTHS, did you receive any of the following services from a doctor or health care provider?

• Information or advice about birth control

• A method of birth control or a prescription for birth control

• Information or advice about other sexually transmitted diseases (STDs), such as gonorrhea, chlamydia, syphilis, herpes, HIV, AIDS, or HPV

• Testing for STDs

• Treatment for STDs

• Information or advice about using condoms to prevent STDs

• None of the above

2. Have you ever received:

• A Pap test - where a doctor or nurse put an instrument in the vagina and took a sample to check for abnormal cells that could turn into cervical cancer?

• An HPV test - where a doctor or nurse put an instrument in the vagina and took a sample to test for the HPV virus?

• The cervical cancer vaccine, also known as the HPV shot, Cervarix, or Gardasil?

• None of the above

The next question is for participants who were born male. If you were born female answer questions 12 and 13 then skip to Section H, Educational & Developmental Services

2. DURING THE PAST 12 MONTHS, did you receive any of the following services from a doctor or health care provider?

• Information or advice about your partner using methods of birth control

• Information or advice about HIV or AIDS

• Information or advice about other sexually transmitted diseases (STDs), such as gonorrhea, chlamydia, syphilis, herpes or AIDS, HPV

• Testing for STDs

• Treatment for STDs

• Information or advice about using condoms to prevent STDs

• Information or advice about using condoms to prevent pregnancy

• None of the above

H. Educational & Developmental Services

The next questions are about educational and developmental services you may have received since leaving school.

1. Since leaving school, have you received any of the services listed in the table below? Do not include services/help received from family or friends.

	Yes, received after leaving school	No, did not receive after leaving school	If no, did you need this service?
Financial aid, like paying for college classes or training.	☐	☐	☐ Yes ☐ No
Educational assistance or tutoring.	☐	☐	☐ Yes ☐ No
Reader or interpreter, such as a sign language interpreter.	☐	☐	☐ Yes ☐ No
Independent living or occupational therapy (like help with doing things such as managing money, cooking, or housekeeping).	☐	☐	☐ Yes ☐ No
Childcare services or parenting skills training.	☐	☐	☐ Yes ☐ No
Social work services.	☐	☐	☐ Yes ☐ No
Physical therapy.	☐	☐	☐ Yes ☐ No
Devices or assistive technology services (like a special calculator, reading machine, or communication device).	☐	☐	☐ Yes ☐ No
Other services (Please specify):	☐	☐	☐ Yes ☐ No

2. Overall, how satisfied have you been with all services you have received since leaving school?

• Very dissatisfied

• Dissatisfied

• Neither satisfied nor dissatisfied

• Satisfied

• Very Satisfied

I. Romantic Relationships, Sexual Orientation, and Gender Identity

The next questions are about romantic relationships, sexual orientation, and gender identity. You can skip any questions that make you feel uncomfortable. Your responses will be kept private and will not be shared with anyone.

1. Do you consider yourself….

• Male

• Female

• Non-binary

• Other, please specify:______________________

2. Do you consider yourself transgender?

• Yes, transgender, male-to-female

• Yes, transgender, female-to-male

• Yes, transgender, nonconforming

• No

• Don’t know

3. Which of the following best describes how you think of yourself?

• Heterosexual or straight (attracted to people of the opposite sex)

• Gay or lesbian (attracted to people of the same sex)

• Bisexual (attracted to people of both sexes)

• Pansexual (attracted to people of any gender identity regardless of their biological sex)

• Asexual (not sexually attracted to other people)

• I describe my sexual identity some other way

• I am not sure about my sexual identity (questioning)

• I do not know what this question is asking

4. Have you ever been in a relationship with a romantic partner?

• Yes

• No

5. Are you currently dating or in a relationship with a romantic partner?

• Yes (Skip to Section J)

• No

6. How much would you like to have a romantic relationship in the next year?

• Not at all

• Very little

• Somewhat

• Quite a bit

• Very much

J. Sex Education and Behavior

The next few questions are about your sexual education and behavior. You can skip any questions that make you feel uncomfortable. Your responses to these questions will be kept private and will not be shared with anyone.

1. Please tell me where you received formal sex education or any information on the following topics (check all that apply).

☐	School	Church		Community Center	Doctor’s office	Health Center	Friends	Parents/Family	Online, Internet	Never have received instruction or information on this topic
How to say no to sex	☐	☐		☐	☐	☐	☐	☐	☐	☐
Methods of birth control	☐	☐		☐	☐	☐	☐	☐	☐	☐
Where to get birth control	☐	☐		☐	☐	☐	☐	☐	☐	☐
Sexually transmitted diseases (STDs)	☐	☐		☐	☐	☐	☐	☐	☐	☐
How to prevent HIV/AIDS	☐	☐		☐	☐	☐	☐	☐	☐	☐
How to use a condom	☐	☐		☐	☐	☐	☐	☐	☐	☐
Some other type of education or information			Please specify type of education/information and place received:

2. Have you ever had sex, either with a same or opposite sex partner (this includes having oral, anal, or vaginal sex)?

• Yes

• No (Skip to question 13)

3. The last time you had sex with a partner, what method or methods did you or your partner use to prevent pregnancy and/or sexually transmitted diseases (STDs)? (Check all that apply)

• No method was used to prevent pregnancy or STDs

• Birth control pills (Do not count emergency contraception such as Plan B or the "morning after" pill.)

• Condoms

• An intrauterine device (IUD, such as Mirena or ParaGard) or implant (such as Implanon or Nexplanon)

• A shot (such as Depo-Provera), patch (such as Ortho Evra), or birth control ring (such as NuvaRing)

• Withdrawal

• Some other method

• Not sure

4. Did you drink alcohol or use drugs before you had sex the last time with any partner (same or opposite sex)?

• Yes

• No

5. How old were you when you had sex for the first time with any partner (same or opposite sex)?

• Less than 15 years old

• 15 to 17 years old

• 18 years old or older

6. DURING THE LAST 12 MONTHS, with how many people did you have sex (same or opposite sex)?

• I have had sex, but not during the past 12 months

• 1 person

• 2 to 3 people

• 4 or more people

7. Has anyone ever forced you to do sexual things that you did not want to do? Examples might include unwanted kissing or touching, physical pressure (being hit, slammed into something, or injured with an object or weapon) or non-physical pressure (verbal pressure, threats of harm, or by being given alcohol or drugs)

• Yes

• No

• Prefer not to say

Please contact the National Sexual Assault Hotline by calling 800-656-4673  if you are experiencing sexual assault or sexual harassment.

K. Substance Use and Behaviors

The next questions asks about substance use. You can skip any questions that make you feel uncomfortable. Your responses to these questions will be kept private and will not be shared with anyone.

1. Think about the statement, “I did too much.” IN THE LAST 12 MONTHS, how often did this apply to your…

☐	None of the time	A little of the time	Some of the time	Most of the time	All of the time	Never used or N/A
Alcohol use	☐	☐	☐	☐	☐	☐
Tobacco or Nicotine use	☐	☐	☐	☐	☐	☐
Cannabis/marijuana use	☐	☐	☐	☐	☐	☐
Cocaine use	☐	☐	☐	☐	☐	☐
Opioid use	☐	☐	☐	☐	☐	☐
Gambling	☐	☐	☐	☐	☐	☐
Shopping	☐	☐	☐	☐	☐	☐
Video gaming	☐	☐	☐	☐	☐	☐
Over-eating	☐	☐	☐	☐	☐	☐
Sexual activity	☐	☐	☐	☐	☐	☐
Over-working	☐	☐	☐	☐	☐	☐

L. Beliefs & Interests

1. While some of these questions will use words such as “spirituality” please answer them in terms of your own personal belief system, whether it be religious, spiritual or personal.

	Not at all	A little	A moderate amount	A lot	An extreme amount
☐o what extent does any connection to a spiritual being or force help you to get through hard times?	☐	☐	☐	☐	☐
To what extent does any connection to a spiritual being or force help you to tolerate stress?	☐	☐	☐	☐	☐
To what extent does any connection to a spiritual being or force help you to understand others?	☐	☐	☐	☐	☐
To what extent does any connection to a spiritual being or force provide you with comfort / reassurance?	☐	☐	☐	☐	☐

2. What particular abilities or strengths do you have? Check all that apply or "none of the above" if none apply.

• An ability to think in unusual, creative ways

• An ability to focus intensely on certain topics

• Honesty

• A sense of justice

• A different way of experiencing the world

• Ability in mathematics, science, or computers

• Ability in art or music

• A very good memory for certain topics

• An ability to focus on small details

• An incredible imagination

• Kindness

• Other, specify: _____________________________________

• None of the above

3. Do you have an intense area of interest or focus? (Sometimes this is referred to as a “special interest”)

• No (Skip to end of survey)

• Yes

4. What type of special interest or topic do you have? Check all that apply if you have more than one.

• Modes of transportation (such as trains, automobiles, aircraft)

• History

• Science (such as astronomy, geology)

• Science fiction or fantasy (in books, films, video games)

• Computers

• Mathematics or numbers

• Animals (such as dogs, fish, horses)

• Movies

• Cartoons or anime

• Maps, calendars, or dates

• Timetables or schedules

• Dinosaurs, monsters, or fictional creatures

• Music

• Art

• Sports

• Sewing or crafts

• Other, specify: _______________________________

5. How does your special interest affect your life? Check all that apply or "none of the above" if none apply.

• My job or career involves my special interest.

• My studies in school or college are (or were) related to my special interest.

• I have relationships based on my special interest. I make friends or join groups focused on the same interest.

• I enjoy activities and hobbies relating to my special interest.

• My special interest sometimes gets in the way of success at work, school, or in relationships.

• The special interest has gotten me in trouble. (For example, it may have led to addictive behavior or breaking the law.)

• Other, specify: _________________________________

• None of the above

You have reached the end of the survey.

Thank you for participating!

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